Thank you both for your concern and suggestions! For me, the onset clearly coincided with the severe exacerbation/hospitalization that led to the diagnosis. The anemia did persist after the sepsis resolved, but, since the hospitalization, it has been mainly mild, with only one transient drop into moderate. My ID doctor actually was the first to mention the connection in passing as he looked at my labs, and I looked into it a bit to see what the mechanism might be (particularly since it predated my first episodes of hemoptysis). It appears that the anemia that can be seen with MAC is not specific to it, but likely an instance of the broader category of "anemia of inflammation" (AKA "anemia of critical illness", if acute, and "anemia of chronic disease" , when chronic). It is seen in association with many inflammatory conditions including acute and chronic infections and autoimmune disease. It is thought to be driven by an immune response, which results in storage or sequestration of iron. This keeps the iron away from a pathogen (MAC apparently likes iron), which is a useful response acutely, but chronically, it also keeps it (quite literally) out of circulation. Anyway, at least for now, the anemia is fortunately not bad enough to worry about. It is just a part of my new normal (and actually less disconcerting than recently discovering I have E. coli in my lungs, which was just weird).
Salynn, Thank you for this helpful explanation about anemia. I have a low red blood cell count. (I have been on the Big Three antibiotics for 2 months following a MAC diagnosis.) Back in the Spring I had several iron infusions because of anemia and I've been wondering why these infusions didn't do more to elevate the red blood count. But your explanation makes a lot of sense. My red blood count isn't low enough to alarm my doctor, but she wants to check it again in 6-8 weeks.
Salynn, Thank you for this helpful explanation about anemia. I have a low red blood cell count. (I have been on the Big Three antibiotics for 2 months following a MAC diagnosis.) Back in the Spring I had several iron infusions because of anemia and I've been wondering why these infusions didn't do more to elevate the red blood count. But your explanation makes a lot of sense. My red blood count isn't low enough to alarm my doctor, but she wants to check it again in 6-8 weeks.
I was being supplemented on iron when my MAC got worse. I do feel like it was from the iron. Now I take no iron at all. I am mildly anemic and I feel fine. Will never take iron again.
Strangely, my hemoglobin levels are fine, but my red blood cells are low. My doctor told me not to take iron. I asked him why red blood cells were low and he said "It's complicated." I should research it.
Take care
Strangely, my hemoglobin levels are fine, but my red blood cells are low. My doctor told me not to take iron. I asked him why red blood cells were low and he said "It's complicated." I should research it.
Take care
My red blood cells have been low a number of times. Once was while on long-term antibiotic therapy. Another was while I had heavy metal poisoning. But except after hip replacement surgeries, my hemoglobin has always been fine.
I drew a (layperson) conclusion that there seemed to be a relationship between high white blood or lymphocyte counts and low red counts. I might be totally off base...
Sue
My pulmonologist told me that iron binds to Pseudomonas. Zinc also does. I am not sure what that means exactly or if taking either could make things worse. But I got the impression he was saying if you need iron or zinc you might take them but otherwise not to? Perhaps it is similar with MAC? I do not take Zinc often but when I do it usually seems helpful.
My pulmonologist told me that iron binds to Pseudomonas. Zinc also does. I am not sure what that means exactly or if taking either could make things worse. But I got the impression he was saying if you need iron or zinc you might take them but otherwise not to? Perhaps it is similar with MAC? I do not take Zinc often but when I do it usually seems helpful.
Irenea8. Your post caught my attention and wondering what does this all mean. I've taken Zinc for years to help my immune system. I was first diagnosed with MAC and Pseudomonas five years ago. I had a GI bleed the end of last November and am now anemic. The iron pills did not help and I'm set for a iron infusion this coming Wednesday. Glad to see our lung problems are getting more research and interest.
Irenea8. Your post caught my attention and wondering what does this all mean. I've taken Zinc for years to help my immune system. I was first diagnosed with MAC and Pseudomonas five years ago. I had a GI bleed the end of last November and am now anemic. The iron pills did not help and I'm set for a iron infusion this coming Wednesday. Glad to see our lung problems are getting more research and interest.
Do you still have Pseudomonas? Or was it cleared? Mine is chronic so i have it all the time. My pulmonologist also said in that same conversation that an iron infusion would be risky for me due to the Pseudomonas. If you do have chronic Pseudomonas can you check this with your pulmonologist? Mine specializes in Bronchiectasis and CF and is in the specialty pulmonary department at the University of Iowa Hospitals and Clinics. Also some iron pills may absorb better than others or taken with Vit C.
Do you still have Pseudomonas? Or was it cleared? Mine is chronic so i have it all the time. My pulmonologist also said in that same conversation that an iron infusion would be risky for me due to the Pseudomonas. If you do have chronic Pseudomonas can you check this with your pulmonologist? Mine specializes in Bronchiectasis and CF and is in the specialty pulmonary department at the University of Iowa Hospitals and Clinics. Also some iron pills may absorb better than others or taken with Vit C.
@irenea8. The docs have never called my Pseudomonas "chronic." There have been periods over the last 5 years that sputum did not show it but it always returns. Currently I'm on Tobramycin twice a day. I neb two weeks on and two weeks off. I'm going to send my pulmonary doc a portal message and ask questions and hopefully get something back before my early AM iron infusion Wed. The iron infusion was ordered by my primary so the pulmonary doc is not aware. Thanks.
Connect
Connect
Like
Helpful
Hug
Salynn, Thank you for this helpful explanation about anemia. I have a low red blood cell count. (I have been on the Big Three antibiotics for 2 months following a MAC diagnosis.) Back in the Spring I had several iron infusions because of anemia and I've been wondering why these infusions didn't do more to elevate the red blood count. But your explanation makes a lot of sense. My red blood count isn't low enough to alarm my doctor, but she wants to check it again in 6-8 weeks.
-
Like -
Helpful -
Hug
1 Reactionhttps://www.youtube.com/watch?v=wFdLASqg8T4
I found this and they are saying that iron should not be taken.
-
Like -
Helpful -
Hug
1 ReactionSome people take Lactoferrin instead of iron for low hemoglobin. There is a liquid iron called Floradex, which is very good for anemia.
-
Like -
Helpful -
Hug
1 ReactionI was being supplemented on iron when my MAC got worse. I do feel like it was from the iron. Now I take no iron at all. I am mildly anemic and I feel fine. Will never take iron again.
Strangely, my hemoglobin levels are fine, but my red blood cells are low. My doctor told me not to take iron. I asked him why red blood cells were low and he said "It's complicated." I should research it.
Take care
My red blood cells have been low a number of times. Once was while on long-term antibiotic therapy. Another was while I had heavy metal poisoning. But except after hip replacement surgeries, my hemoglobin has always been fine.
I drew a (layperson) conclusion that there seemed to be a relationship between high white blood or lymphocyte counts and low red counts. I might be totally off base...
Sue
My pulmonologist told me that iron binds to Pseudomonas. Zinc also does. I am not sure what that means exactly or if taking either could make things worse. But I got the impression he was saying if you need iron or zinc you might take them but otherwise not to? Perhaps it is similar with MAC? I do not take Zinc often but when I do it usually seems helpful.
-
Like -
Helpful -
Hug
2 ReactionsIrenea8. Your post caught my attention and wondering what does this all mean. I've taken Zinc for years to help my immune system. I was first diagnosed with MAC and Pseudomonas five years ago. I had a GI bleed the end of last November and am now anemic. The iron pills did not help and I'm set for a iron infusion this coming Wednesday. Glad to see our lung problems are getting more research and interest.
-
Like -
Helpful -
Hug
1 ReactionDo you still have Pseudomonas? Or was it cleared? Mine is chronic so i have it all the time. My pulmonologist also said in that same conversation that an iron infusion would be risky for me due to the Pseudomonas. If you do have chronic Pseudomonas can you check this with your pulmonologist? Mine specializes in Bronchiectasis and CF and is in the specialty pulmonary department at the University of Iowa Hospitals and Clinics. Also some iron pills may absorb better than others or taken with Vit C.
@irenea8. The docs have never called my Pseudomonas "chronic." There have been periods over the last 5 years that sputum did not show it but it always returns. Currently I'm on Tobramycin twice a day. I neb two weeks on and two weeks off. I'm going to send my pulmonary doc a portal message and ask questions and hopefully get something back before my early AM iron infusion Wed. The iron infusion was ordered by my primary so the pulmonary doc is not aware. Thanks.
-
Like -
Helpful -
Hug
1 Reaction